Tag: chronically ill

So. It’s Thursday. Just a typical day – the day after Anzac Day, in fact. I’m sitting in the uni computer lab chatting to an advisor about how I can withdraw from the course without penalty, since it’s after the census date, after all. I’m in the final year of my degree, and I’m withdrawing yet again because what I *think* I’m capable of doesn’t match up to the reality.

I know I’m mentally and physically capable of doing this, and honestly it sounds like a pathetic cop-out even to me, but somehow since my surgery last year, everything has further gone to the crabs. Finally, I broke down to BB and admitted that I just couldn’t do it anymore – not in our current situation, anyway. If everything else was perfect (heck, I’d even settle for average), I’d have no problem with completing uni, plus working, plus cooking/cleaning/exercising/socialising/whatever else it is that people (or what I used to) do every day. But it’s not, and so I ultimately had to admit that what I thought I could do wasn’t what I actually can do. It sucks, because I always have my family’s voice in my head telling me that I just have to, and that I’m not trying hard enough. I generally believe in mind over matter, but this is a matter of being physically incapable. The spirit is willing, but the flesh is unfit.

It’s a catch-22, as I’m realising it probably is for all sick people: you don’t feel good/can’t do the things that you usually can, or that everyone else seems to do without as much difficulty, so you try to fix it – you go to the doctor, physio, specialist, surgeon, get some tests, get some prescriptions, try them out, react badly, get surgeries, can’t recover in the same time, can’t keep up, and miss out on school/work and you don’t feel good, so you start the whole process over again. Over and over until you finally strike a balance, until the next time. Most people never find that balance, or can’t afford to keep trying. If you’re lucky, you’ll manage it most of the time, but it will always be there in the background.

I think I’ve mentioned it in a previous post, but after my surgery I threw up everything I ate for several weeks, followed by some things being ok, and then really being not ok, and throwing up again, until it finally settled down. However, something else started instead; something I’d actually experienced a few times before, but never to this extent, or as often. Every time I ate something, my stomach would hurt and feel super uncomfortable, I’d get shooting pains behind my ribs, and my whole abdomen would blow up like a balloon. Really uncomfortable, gross and embarrassing. Except now it’s almost every time I eat anything that’s not rice mixed with miso soup, water and filmjölk (like a Swedish drinking yoghurt). It keeps me up most of the night, even if I’m utterly exhausted, I just cannot sleep (what most people in the chronically ill community refer to as ‘painsomnia’). The other issue is that it will happen for a few days/weeks and then I’ll be fine again to eat most things for a month or so, so it’s difficult to predict. But every time it happens, it’s for longer, more often, and much more painful. Not only that, but I can’t tell whether I’m hungry or nauseous most of the time, which is a really weird feeling, and if I don’t eat every few hours, it gets quite painful and uncomfortable and I feel like throwing up.

Why don’t I just stick to those foods to be safe? Well, think about your favourite food, and then imagine that you could only eat the blandest baby food for the rest of your life, no matter how hungry or how much you’re craving it. I love to cook, and love to try new foods and go out for dinner and drinks (although alcohol has been an issue itself for a few years now -_-), and now instead of: ‘hey honey, what should we eat tonight?’ it’s: ‘ok, more sloppy rice?’ ‘yeah..I guess…’.

Something I think a lot of people don’t realise or give too much thought to (and I’ve been one of them) is that you see sick people – and I mean chronically ill, terminal people – stuck with IVs and ports and pumps, and getting tests and blood tests and scans and ultrasounds, and you just accept on face value that that’s what they’re used to, that their life is like that. But sick people can hate needles too, or faint when they get blood drawn, or hate swallowing giant tablets all day and feel over it and sick, and gross, and not want to. But they just have to, and don’t have a choice. It’s something that you never really get used to. I can’t count the amount of blood tests I’ve had in my life that keep giving me different readings every time, or the amount of doctors I’ve seen, or the amount of tablets I’ve taken. You just want it to stop, and be able to do normal stuff like everyone else – not even everyone else – like you used to. You want to stop being exhausted and unable to concentrate, and to just snap out of it, but it never ends.

Anyway, I’ve got repeats of repeats of blood tests to do for thyroid and coeliac testing and other things I don’t even remember, and stomach ultrasounds and whatever else, on top of the three physios I’m going to for neck, jaw and knee rehab, as well as a specialist dentist for my jaw. Last week I had to test for stomach ulcers, which came back negative – great, right? But in this world, it just leads to more questions, and more tests.

So, my disability support (oh yeah, I have a disability support case worker now, although I’m not on disability), and my doctor have recommended I take a break from study, as I simply can’t keep up with the course load, having a couple of hours to focus on a good day, and am never able to predict when I’ll have a flare of something with regard to due dates and deadlines/tests. My muscles aren’t firing or engaging properly to be able to recover from the surgery, and it only takes a couple of days for muscles, with EDS, to atrophy, so I have to do physio every day to try to make any kind of progress. Of course, on top of being able to focus or have any kind of energy with everything else, is where that aforementioned catch-22 happens.

I used to be so athletic. In my teens, I’d do 100 situps and pushups every morning, walk to school, do 2 hours of touch football, walk home and go to the gym and do 50 laps in the pool. That was an average day for me (a bit too much, but my family are PE teachers and coaches and have an obsession with exercise, to the detriment of actual schoolwork). I used to be muscular and slim, although I thought I was fat (ha! If 15 year old me could see me now, fml). I used to do a full face of makeup every day, no matter how I was feeling, and dye my hair all the time. I had piercings and plans for more tattoos, and go out drinking all night. I’d had medical issues since birth, but I always did more than other people and pushed myself further than the average person, which was when I started to experience the real symptoms of EDS. Now, I can’t even get out of bed some days. I have to sit on a chair in the shower, and having BB even touch my skin sometimes feels like a punch. He even has to lift me off the couch sometimes. It feels utterly pathetic when I still see myself the way I’ve described above. That’s why it’s taken me so long to admit what I can and can’t do.

Wow, that sounds overwhelmingly negative, but actually, although I have so many frustrating and exhausting things to deal with, I have never been this happy, overall, in my life. I said I would be honest, authentic, and fearless when it came to representing myself here. I’ve been exhausted every day lately for no reason, and trying to balance everything to actually make some recovery progress. Actually, the last post I made took me and BB months to create, and I only finished it the other day before posting. But I still love doing the things I used to, although sometimes I literally can’t handle it, I still like to be asked. I’ve even found new hobbies that I actually can do – if you’ve been following my insta or facebook, you’ll know I’ve discovered a passion for video games, and art I can do on an iPad from bed. Hopefully now I’ll be able to be more active on here, since I feel much more creative without the stress of being able to keep up with uni at the moment.

Sorry for the long rant post! Just some thoughts in between promised posts, ie Skincare :|. With so much brain fog, it’s all I can manage, and if I tried to make proper posts, it wouldn’t be anywhere near the quality I want. So for now, I’ll be playing God of War and Tomb Raider, and experimenting on Procreate, while I try to keep up with rehab and figure things out.

The past couple of years have been big for me in terms of health. I finally received my formal diagnosis of Ehlers-Danlos Syndrome Type 3 (Hypermobility type, or H-EDS), and not long after, I got corrective knee surgery, something I’d waited on (and sometimes had to ignore), for the previous five years. Lately, I’ve been reflecting on these major events, but also on the small things that make daily life more ‘normal’.

Due to my increasing understanding of EDS these past few years, I have mixed emotions. I feel relief that I am making changes to prevent and maybe reverse any further injury or deterioration, but I also have concerns, and fear of what lies ahead. I can’t help but feel sad and angry that there are so many things I wish I’d known, or should have done even a couple, let alone five or 10 years ago.

Nevertheless, most of the time I do try to stay positive, and one of the things that has made a difference is something small, but that has significant impact. I pack a day kit of a few small items I can take with me, to help me through days when I am out, which take a bigger toll on my energy, and sometimes cause pain due to the extra exertion.

Some days, I don’t need it at all, but the nature of the illness is such that you will never know what will happen; maybe I turn a corner and dislocate my knee, or I pull my chair in at a restaurant and dislocate my thumb (both of which have happened), among many other things. If someone were to ask me a couple of years ago what I packed for a day out, I’d just tell them: a couple tablets of Panadeine, water, wallet and makeup.

Note: I’m in Australia, so this article mentions products found here, but I’ve tried to keep them general, in that you can find alternatives. Obviously everyone has different needs, but this is what I’ve found to be most helpful, especially as steps that complement each other, or ‘building a ladder’, as Martina Stawski of Simon & Martina (a Youtuber couple I’ve been binging – imagine my surprise when I found a video talking about her H-EDS!) put it. This article isn’t meant to be prescriptive, but more as a guide for you to make your own kit that suits you. I’m also modifying it myself and experimenting with bits and pieces depending on my needs, day to day, but this is my core group:

Daiso Cellulite Roller (AUD$2.80) – This works amazingly as a mobile ITB roller/massager. Mine gets extremely tight and pulls my kneecap to the outer side = more likely to sublux or dislocate, so when I do more activity than usual, I NEED to use this. I have quite a bit of trouble standing and walking, but for some reason cycling and gym work is much easier-I’m grateful just to be able to do activity and exercise in general, though. For something so simple and cheap, it’s a must-buy!

Lockeroom Pocket Physio Triangle (AUD$15) – You can get this from any physiotherapist, and it basically acts as a pressure point you can use, eg for tight Temporomandibular Joint or for deep-tissue pain in shoulders/neck

Magnesium Spray (AUD$20) – this may sting and itch sensitive skin, but it can help muscle aches. I was sceptical at first, but I do find if I’ve been lacking magnesium I get muscle cramps and spasms, so this is a good way to get it into the affected spot quickly

Futuro For Her Wrist Guard (AUD$30) – especially if you do a lot of computer work or your hands get stiff, this helps give some support to wrists and hands. I take the metal part out so I can sleep with it if I need to.

Oval 8 Finger Splints (~$8 each) – not gonna lie, these can be a bit uncomfortable at first with delicate skin, but I never realised until I wore them just how much I hyper-extended my fingers. You won’t be able to use these if you need to write (unless you can get away with writing like you’re 4 years old), but typing is fine. I’ve lost a few of these, so I suggest keeping them in a little bag/box when not in use!

Strapping/KT tape (large) with small scissors – For sprains and dislocations, having that extra support is essential – you can find tutorials on Youtube if you’re ever stuck with how best to use it. Buy the large tape, and if you need to use it for fingers or smaller joints, just cut the tape lengthways/half as required.

Brita Sports Filter Water Bottle (AUD$15) – there’s hard water in the taps where I live, so it’s nice to be able to fill up wherever. If I don’t drink at least 2L of water a day, I don’t feel very well, so this is extremely important. I’ve found it is the most sturdy filter bottle widely available in Australia, and I always look out for 30% off sale specials for the filters.

Deep Heat Cream (AUD$5) – first of all; if there was a perfume of Deep Heat, I’d be the number one customer in the world, second; this can help even just by distracting from acute pain with the coldy-hot sensation (via Methyl Salicylate – be careful if you have a sensitivity – I do, but for some reason, I find using this fine), and the smell (for me) is super comforting and refreshing

Omron TENS Unit (AUD$50) – Again, something at first I was sceptical of, but when I tried it, it can help with pain management. Unless you need to place it in an awkward area, these are nice and discreet, and you can adjust the intensity and type of pulse stimulation. TENS units are really expensive in Australia for some reason, but thankfully I was able to get a really nice unit from Amazon US for a fraction of the price. Lately, Aldi has a sale where their TENS machines are only ~$30!

Crystallised Ginger (AUD$4pk) – I get really nauseous due to certain foods, or if I don’t eat regularly enough, or if I am being driven somewhere, so having a tin of ginger on hand that I can chew has saved me from needing to go home early many times

Couple blister packs of over-the-counter medication each (Mersyndol, Paracetamol, Panadeine Extra, Telfast, Sudafed). Ibuprofen (Neurofen) or Aspirin is not on the list as it causes a lot of issues to gut lining. The pain killers in the list generally don’t take away much pain, and only usually last for an hour or so, but are sometimes preferable than taking anything stronger or nothing at all. I’ve included antihistamines such as Telfast or decongestant (Sudafed), as I get awful sinus and migraines due to allergies/sensitivities that would mean my day was a write-off without. Best advice: follow the directions of each medication, such as taking them with food or not to mix them with certain other drugs.

I keep all of these in a clear case I can easily slot into my Anello backpack that is extremely handy, light and easy to carry.

Hope this post has been helpful!

Love,

Lo xx

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About Me

Hi!

I’m Lola, a qualified Beauty Therapist based in Australia. I have Hypermobile Ehlers-Danlos Syndrome, and aim to live the fullest life I can, while managing my health issues. I hope I can help others who are dealing with similar things!